Tag Archives: rheumatoid arthritis

We’ve all heard the warnings about obesity and RA. However, a new study suggests that fat cells may actually trigger an earlier onset of RA and can lengthen the time it takes for treatments to work. But if you have RA, it’s not just as easy as “diet and exercise” to lose those unwanted pounds.

I’ll admit to being terrified of needles growing up. I’d pass out getting blood drawn or (once) even getting an injection. Fast forward to today and being an RA patient. Not only do I get blood drawn once a month for lab work, I give myself a weekly injection and get regular infusions of a biologic medication.

The decision to use a biologic medication is significant and should be discussed with your doctor before you begin treatment, when you start the treatment and as you move forward. The decision of which treatment that’s right for you is also an important discussion. One of the things to consider is the delivery method. That is to say, are you more comfortable with an injection that you give yourself at home or an infusion administered at a medical facility? Doing your homework before having that discussion with your doctor will help you be prepared and better understand your options. There are some excellent online resources including an entire section dedicated to biologic treatments on JointDecisions.com.

Over the years, my journey with RA has included being on nearly all the biologic treatments, so I’ve had a lot of experience with both injections and infusions. The hardest part for me was getting over the fear of the injection or infusion and the actual experience has not been that bad (even for someone like me who has always disliked needles).

That being said, there are some things to consider for both injections and infusions, including the following:

Injections

Biologic injections that you (or a caregiver/loved one) do at home are a convenient alternative because you can determine an injection schedule that works for you. I used to do my injections in the evening. I seldom had any side effects from the medication but if, for example, I developed a mild headache, then I’d generally be in bed asleep for the night and it would be gone when I woke up.

Injectable biologics need to be stored and disposed of correctly. The medications need to be refrigerated which isn’t a problem when you’re at home, but is a consideration if you travel a lot and have to keep the medication cold while away. You should also dispose of the used syringes in a responsible manner. Regulations vary by location but I use a mail-order service that, for a small fee, disposes of my full containers and sends me a new one.

In my opinion, the two biggest considerations are the dosing schedules and syringe type.

The dosage schedules for injectable biologics vary. While the decision on which treatment is the right one for you should be the one with the best chance of success, if the injection schedule is going to be difficult for you, it is something you should discuss with your doctor as part of the overall treatment choice.

Injectable biologics generally come in a prefilled syringe or a prefilled automatic pen injector, and some medications are offered in both forms. Although some medications still come in a vial and syringe combination, the prefilled option is great because they can help eliminate any dosage errors.

The prefilled syringes I have used have all been slightly different, but they all generally resemble the syringes your doctor uses to give you injections. They have a needle on one end and a plunger on the other end with the medication in between. You insert the needle end into the injection site (usually the top of your thigh or your abdomen) and push with the plunger to inject the medication. The really nice thing about the syringes is that you can manage the injection speed to as slow or as fast as you need to be comfortable.

Automatic pen type injectors are, in my opinion, super easy to use. They generally look like a tube with a push button on one end. You press the end of the tube against your skin, push the button and about 10 to 15 seconds later, you’re done until next time. This type of syringe automatically injects the medication for you, eliminating the need to actually inject yourself with a needle, which can be difficult for some people.

Infusions

I had been on injectable medications for a while when my rheumatologist first changed me to an infusion treatment better suited for me.

I get my infusions at a designated room at my doctor’s office, but I’ve also had one at the hospital and I know people that go to special infusion centers that are set up for these kinds of procedures. The medication is delivered via an IV into your bloodstream. Depending on the medication, the infusion can be as quick as half an hour or may take several hours. However, the time between infusions is usually longer than it is than for injections.

The first time you have an IV (or for me, even the 10th or 12th time) can be scary. This is normal and any anxiety you have should fade over time. I personally have a great infusion nurse who makes it her goal to make me as comfortable as possible and the other infusion nurses I’ve met are very capable and very compassionate.

I occasionally get asked if I have a preference of injections or infusions. Both have their strong points. My personal preference would be NOT to have RA at all and to never have to consider one over the other. But since I do, I’m glad that there are advanced medications out there and that there are good options available to the doctor and to the patient.

I am especially glad there is such a strong community of RA patients and support organizations, such as Joint Decisions (http://www.jointdecisions.com). I feel that the more knowledge someone has, the more empowered they become to manage their condition and have a meaningful dialogue with their doctors. Groups such as Joint Decisions help provide the education and information that help make us better informed people and therefore better advocates for our own healthcare.

This post is sponsored by Joint Decisions, an educational initiative developed by Janssen Biotech, Inc. that empowers people living with RA to take a more active role in the management of their disease and have more open and honest conversations with their doctors. I was compensated by Janssen for my time spent collaborating on content for Joint Decisions.

I think it was Labor Day weekend when I heard the first “snowflake” commercial and had this immediate “holiday alert” jolt. At the time I was cleaning in the kitchen and had a spray bottle of cleaner in my hand. It was a full-size bottle with a standard pull spray trigger and it was literally killing my hands to use it. I thought to myself, “Self, you should get some smaller spray bottles with the full-hand triggers that are lighter and easier to use.” Then I remembered I’d probably need four or five of them for each cleaner that I use and since they cost $5 to $10 each, that I’d probably wind up not buying them.

But what a great gift idea for someone with RA. So many times we think about things that would make our life easier, but they somehow get pushed from the “need” list to the bottom of the “want” list.

IMHO, patients’ voices should be a part of the medical conversation. I am delighted to see that our friends at RheumatoidArthritis.net are doing a survey of how patients might help develop clinical trials. Even if you’ve never participated or even thought about participating in a trial, I encourage you to take this quick seven-question survey. You can find it here: https://rheumatoidarthritis.net/clinical/patient-voice-clinical-trial-development/.

The results of the survey will be published on the site once the results are compiled.

I was supposed to have my latest Actemra infusion in a few days. I say “supposed to” because as we all know, plans tend to change when you have RA.

I first started on Actemra injections the middle of last year and switched to infusions about a year ago. In January, we maxed out the infusion dosage and added methotrexate to the mix and, for the first time for some time, I felt like something was finally working (again).

Like everyone, I love it when a treatment makes me feel better. But unlike most people, my system tends to build up a resistance to the treatment over time and it quits being effective. This has now happened to Actemra as it has eight other drugs before it.

I moved up my rheumatologist’s appointment to before the infusion because I couldn’t see undergoing that expensive treatment if it wasn’t going to help. I guess the good news (perhaps bad news?) was that my joints were visibly swollen and tender when I went in for my appointment yesterday. I hate it when I go in whining and both my joints and my labs look perfect.

I took my list of past drugs in with me to discuss. About the only thing not on the list is Rituxan, an infused biologic and my rheumatologist has been hesitant to recommend this for me. We talked through those reasons which I understood. And then we talked about Simponi Aria, which is the infused version of the injectable biologic, Simponi.

I had been on injectable Simponi in 2009, shortly after it had been introduced and I did well on it. However, the effects didn’t last the entire time between injections, so we moved on to the next drug. Since then Simponi Aria has been introduced giving additional treatment plan options. The plan is to keep me on the injected methotrexate and oral meloxicam as well. While we’re waiting for the insurance approval for Simponi Aria to percolate through, I’ll do a low dose of prednisone to help keep things calm.

I’m excited for the change because what we were doing wasn’t working. The only fly in the ointment is that I’ve “failed” on every other TNF-inhibitor I’ve been on (and I’ve been on all of them). There is discussion in the medical community and some evidence to indicate that failing on a TNF is an indicator that subsequent TNF inhibitors will also fail. That being said, every biologic drug is different. There are even differences within the same class of drug. Of all the drugs I’ve been on, I liked Simponi the most, so I am hopeful that Simponi Aria will work well for me this time.

If for some reason it doesn’t, I still have a rheumatologist that listens to me and is committed to my care, which is a major blessing in itself.

So those are the changes brewing in my life. I hope whatever changes that are in store for you bring health and happiness to you and yours. Thanks for checking in.

“It’s the engine, not the caboose, that kills you,” is actually a saying that’s used in Alcoholics Anonymous as a warning against taking that first drink – which can lead to the second, and third and so on. It was also used by Jack Cush, MD, a preeminent rheumatologist in a recent article. One of the themes of the article is that in focusing on the potential side effects of treatment, we forget that the greatest health risk is the disease itself.

I ran across an interesting study the other day on pain in America that was reported by Rheumatology Network. While there is some very interesting data about pain in the US, a major focus of this discussion was Non-Steroidal Anti-Inflammatory Drugs, better known as NSAIDs.

NSAIDs are a major weapon in the battle against pain as they not only help relieve pain, they also relieve inflammation. As you can imagine, a lot of people with arthritis (of all kinds) take NSAIDs. They’re available as a prescription but there are also many forms available over-the-counter (OTC) including such brand names as Advil®, Aleve®, and Motrin®1. The most commonly available NSAID is aspirin. NSAIDs are in such widespread use that in 2014, 123 million prescriptions were filled for them in the United States, according to an audit from IMS Health and one-third of the general population have used over-the-counter NSAIDs.

Even at the lower-dose OTC levels, these are powerful drugs and, as such, can have powerful side effects. While the most common are associated with stomach issues, NSAIDs also carry warnings for more serious complications including heart and kidney problems.

I’ve often wished for a test that could help predict if a specific drug or treatment plan was going to be successful. I was encouraged recently when I read that certain biomarkers could be used to help predict if a popular biologic, rituximab (Rituxan) would be successful.

Read more about what I learned, including a link to the study at RheumatoidArthrtis.net, here.

One of the things I’ve enjoyed most the last few years is the connection I’ve made with other people in the RA community. Not only do I have the privilege of having a number of people who follow my blog (thank you!), I’ve been able to make the acquaintance (either virtually or physically or both) with other bloggers.

One of my favorite cohorts is Pollyanna Penguin who lives in the UK and has an expectedly and wonderfully British perspective on life, RA and the health system in England. In her post today she provides some excellent, universal advice for people who have been diagnosed with RA. Among her tips (which includes the admonition of “DON’T PANIC” ala Hitchhiker’s Guide to the Galaxy) is the important reminder that everyone’s journey is different. Just because one person’s path/treatment plan/experience includes certain challenges, doesn’t mean that yours will.

I am somewhat of a poster child for some worst-case scenarios due to the many surgeries I’ve had as a result of RA. But trust me, I know far more people with RA who have successful, productive non-eventful lives with successful treatment plans than I do who have had even one joint replacement. And my surgeries have greatly increased the quality of my life, relieving pain and allowing me to continue to lead a full and active life.

I think that part of the trap (if that’s the right word) that we bloggers (and other journalists) fall into, is that we tend to write about dealing with the challenges of a situation — in this case RA. It would be a pretty boring post to write that I got up, went to work, took a walk during lunch, met my husband for dinner after work and then got a good night’s sleep. (Repeat as necessary.) But that’s exactly what my routine was for years both before and after my diagnosis. Treatment plans and surgeries have been (for me) just sidebars in an otherwise pretty busy life. However, reading through my blog that documents all these experiences could be a pretty scary experience.

As bloggers, one of our goals is to help our readers deal with the challenges we’ve faced by relaying our personal experiences — so our blogs tend to focus on those events, perhaps at the expense of what “normal” means on a day-to-day basis.

But to underscore Polly’s invaluable point, everyone’s experience is different. RA affects each of us differently, we all react to medications and treatment plans differently and we all have different beliefs and fears. If I, as a blogger diagnosed with RA, can help you by sharing my experiences (including the good stuff as well as the scary), then my time is well spent.